Neuroethics

The Neuroethics Core provides ethics partnerships for NeuroDevNet researchers through the infrastructure they have created for robust research collaboration, training, and outreach. Our project leaders encourage critical ethical thinking in all NeuroDevNet project proposals, and provide guidance and participation throughout the life of NeuroDevNet research projects. Toward this goal, a key objective is to identify intersecting and unique ethical and social challenges for FASD, CP, and ASD.

The ongoing work of the Neuroethics Core reflects the research priorities of NeuroDevNet projects and aims to:

1)    Examine key stakeholders’ perspectives (parents, caregivers and leaders of advocacy groups) on the utility, benefits, and risks of neurotechnology (e.g., neuroimaging, neurogenetics) approaches to CP, ASD and FASD.

2)    Study perceived challenges, and characterizing key concerns raised by researchers, clinical specialists, and stakeholders in CP, ASD and FASD in order to inform professional guidelines, educational curricula for research trainees, and future policy-making in neurodevelopmental research.

3)   Examine current practices in the dissemination of treatment information for interventions and educational products available in the open marketplace for children with CP, ASD and FASD.

These aims are unified by the imperative to understand the interactions between different stakeholders’ views on neurotechnology for predicting, diagnosing and intervening on complex neurodevelopmental conditions. They are further linked by perspectives on immediate and long- term risks and benefits, on the value of interventions and resources, on the effects on burden of disease and privacy, and by questions surrounding identity and stigma. Taken together, the immediate and long-term results of our work will culminate in recommendations and guidelines for best practices for NeuroDevNet projects. In addition, we are working hand-in-hand with the NeuroDevNet administrative staff to create internships in science communication for NeuroDevNet Trainees, and with the Knowledge Translation Core to develop ethically sensitive knowledge transfer messages that can be used to increase public understanding of the sciences and solutions for neurodevelopmental disorders.

Team Leads

Judy Illes
University of British Columbia
jilles@mail.ubc.ca

Eric Racine
Université de Montréal
eric.racine@ircm.qc.ca